As we reflect on how far we have come, our Chief Executive Officer, Lavinia Jarrett, looks back on her journey from Deputy Chief Executive to Chief Executive Officer, the launch of our five-year strategy and a new look for us as we celebrate our 25th anniversary. Let’s hear from Vin...

February 2023 marked my first anniversary as CEO at Demelza. I held the interim CEO post for 10 months which was a valuable practice run. You might think that after 23 years at Demelza I would know all there was to know. I do know lots of history, nuances and inspiring stories. I have met some great characters, many incredible families, generous donors, gifted employees, and outstanding volunteers. However, the world has changed and Demelza has needed to keep pace and be brave to forge new ways of doing things. So, there has been a lot for me to learn and that is still the case!

Post-pandemic and that ‘new normal’ that everyone spoke about gave us some real opportunities to look at how we work. Hybrid working is now part of our everyday lives – we are reaping the benefits of that flexibility where it makes sense, but still ensuring our business needs are covered by a robust staff presence at our three sites. It’s been a huge adjustment for everyone, and people have understandably needed support during that process.

We know that each child is a unique, developing individual who needs and deserves personalised care. Those needs change and how we deliver care has needed to change too.

We have capitalised on the opportunities for online services, for individuals and for groups, virtual cafes, discussion groups and drop sessions and therapies. These remain a lifeline for some people.

What was the one thing you wanted to change most when you came into post?

Demelza has a warm and welcoming culture, but I recognised a fear to move forward with anything until we could be certain the idea or concept was ‘practically perfect in every way’. This always came from a good place of wanting only excellence for the children and their families, and I completely understand and applaud that. I also recognise that this has held Demelza back, on occasions. In the last year I have tried to encourage my Demelza colleagues to leave perfection to Mary Poppins and move forward with ideas and initiatives that we can assure ourselves are safe, fair, and beneficial to the children and families who need them. If we have that foundation, perfection will follow as we carefully gather and implement the learning into everything we do. Everyone has been fantastic in their response to this. I am so proud of what our teams achieve. I knew we had it in us!!

What is Demelza’s biggest strength?

No organisation can achieve anything without brilliant people. Demelza is very fortunate; in fact, I believe, it is a standout organisation in this regard. The very best innovation or funding will never achieve optimum success without good people.

Demelza has brilliant colleagues, dedicated volunteers, compassionate donors, steadfast supporters and forward thinking Trustees and Vice Presidents. My job seems rather simple in this mix of expertise and commitment; to provide direction and the best leadership we can possibly give. I know I don’t get it right every time, but I will continue to try.

We have great income generation teams who strive for success and a great ‘customer’ experience. Our clinical teams have excellent expertise, compassion, and an inherent willingness to learn and collaborate with healthcare partners. Our support teams understand their role in what we need to make happen to support our strategy. And the fact is, we are only ever as strong as our weakest part. The Demelza team means the world to me; together we can provide great things for the children and families we serve.

What have been the real stand out moments for you?

It is without doubt talking to the children, young people and to their parents and families. I am in awe of their resilience and care for their children. I have learnt so much from my conversations; it really helps me understand the impact of doing or not doing things and what is important to them.

It is also hearing the parents talk publicly about their experiences at Demelza events. They talk with such poise, resilience and courage. It’s inspiring and humbling and something I will never tire of.

I also spoke to a 30-year-old person who used to use Demelza services for about 12 years until they were discharged from our service due to age. This person is truly inspirational and a stark reality that young people are thankfully living longer and have different needs now. We must help young people leave our clinical service at 18 and all Demelza support services at 25 and transition into adult services. Every situation presents an opportunity and this one is an excellent way to collaborate with our adult services partners.

So, what is next for Demelza?

Our five-year strategy is in full swing, and we are creating the optimum conditions to realise all our strategic objectives. Our recent rebrand is a huge step in the right direction.

Our original brand has served us extremely well. 25 years on, we need a brand that can take us into the digital space and support the narrative around the breadth of services we can provide and how hospices are a place full of fun, hope, laughter, and opportunities to create many special memories for however long a family may have together. It might not be the first thought people may have about a hospice – but it should be because it is true. We will work hard to change misconceptions about Demelza’s work.

External conditions are far from ideal right now, so we have to work smarter to make sure we are doing the right things that are sustainable and will bring maximum benefit. We can only be sure we are doing this by seeking the open and honest feedback from those who use our services and be influenced by those who chose not to use the services too.

I want to build on the success of our in-reach work with other healthcare service providers. Collaboration has to be the way forward and we want to make sure the needs of the children and families using Demelza services are at the centre of those relationships.

If you could wish for one thing for the future...

That’s very easy; a sustainable funding model from the Government. All hospices deserve it, and children’s hospices are no less deserving than any other. Fortunately, fewer children die each year, but the impact on the entire family who become the carer, physiotherapist, speech therapist, nurse and care co-ordinator 24/7, 365 days a year is immense, and can be emotionally, physically, and financially crippling. With fair and predictable funding streams hospices like Demelza can do so much more to support the expert care that children need. We can ensure families, siblings of children with a serious or life-limiting condition, grandparents and all those bereaved have access to bespoke, personalised services that will support their needs.

Caring for a child at the end of their life is highly skilled and is therefore expensive to provide and hard to plan for. It is impossible to predict when a child is in or will be in their last 12 months of life as the Government ask us to do. Would the Government ask voluntary funders to repair holes in our roads, or put out fires because a skilled and trained fire service is not available in the area? Then why is providing end of life care to children not fully funded, or funded at all in certain areas, or at certain times?

Thankfully our donors do understand these needs and are very much part of the Demelza team and the Demelza journey. My sincerest thanks go to all our funding partners, large, small, long and short-term. Without you we simply cannot achieve any of our services.

There is a lot of work still to be done, but I am inspired by the brilliant team I am honoured to lead and the children and families I am privileged to try to support.

Will you join me?